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Was told last recently I have prostate cancer

User
Posted 05 Mar 2024 at 15:53

Hi everyone, in a bit of a daze at the moment, not good with IT so bare with me, took me 20 mins to sign up ! 

I have had a brief look at the conversations and have been a bit baffled, what with all the numbers and codes, will ask one of my grown up sons to look at my notes and paper work from the Hospital, and then get back to you all, for now the doctor said my tumor is 4mm and my Gleason is 2 my numbers were 3/4 I think but will check and get back my PSA was very low 1.9.

Hope the above makes sense ?  regards Mike.

User
Posted 05 Mar 2024 at 15:53

Hi everyone, in a bit of a daze at the moment, not good with IT so bare with me, took me 20 mins to sign up ! 

I have had a brief look at the conversations and have been a bit baffled, what with all the numbers and codes, will ask one of my grown up sons to look at my notes and paper work from the Hospital, and then get back to you all, for now the doctor said my tumor is 4mm and my Gleason is 2 my numbers were 3/4 I think but will check and get back my PSA was very low 1.9.

Hope the above makes sense ?  regards Mike.

User
Posted 05 Mar 2024 at 20:13

Hi Mike, snap, had my diagnosis today as well. Head is spinning a bit but reading conversations on here is helping me out a bit. Keep your chin up and keep reading, knowledge is power. Best of luck with your journey. Neil

User
Posted 06 Mar 2024 at 00:39

Originally Posted by: Online Community Member
Hi everyone, in a bit of a daze at the moment, not good with IT so bare with me, took me 20 mins to sign up ! 

I have had a brief look at the conversations and have been a bit baffled, what with all the numbers and codes

Hello Mike,

Welcome to the forum. I'm sorry that you've needed to find us but glad you have.

Likewise, NeilC.

I'm also very poor at IT and like you was confused with the the numbers and letters, that rate  this disease  I was rubbish at algebra when I was at school.

It's normal to feel baffled on diagnosis.

You'll find plenty of help, support and guidance here.

 

 

 

Edited by member 06 Mar 2024 at 00:46  | Reason: Additional text

User
Posted 08 Mar 2024 at 15:36

Originally Posted by: Online Community Member

Hi Adrian.

The doctor said that yes ! I can opt for active surveillance if I want to, because the tumor is small and the risk of it spreading is also very small ! he said regular ( twice a year MRI and PSA )

Hello mate,

I opted for AS on biopsy results of Gleason 6 (3+3) only 2 out of 15 cores, with reasonable safety margins, T2a. Its what the MDT advised.

Unfortunately, over 20 months mine progressed and I had a prostatectomy. However, I was told that I was unlucky and that only 30% of those on AS with low grade/low volume cancer go onto require radical treatment.

I've always believed in the motto, if it ain't broke don't fix it. If you've been offered AS, that's the way I'd go, BUT, ensure you have all the follow up monitoring, PSA checks, and MRIs etc. Why risk the likely side effects of surgery or RT/HT when it may not be necessary? If whilst being monitored it's deemed radical treatment is required then go for it.

Always be guided by medical advice. I'm not medically trained. But I believe there is conclusive evidence that there is a move for more men to have AS. https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

 

Edited by member 08 Mar 2024 at 15:41  | Reason: Not specified

User
Posted 08 Mar 2024 at 15:42

Hi Adrian,

I also had Gleason 3+4 =7 and PSA 2.19 and was offered Robotic surgery or Brachytherapy  and after looking at the possible side affects on both the options i decided to go for Brachytherapy as i felt it was less invasive.

I had the brachytherapy in 2016 my PSA is very low and 7+ years on it's going very well . I am sure members on this site will give you lots of advise and their views.

John.

User
Posted 11 Mar 2024 at 17:38

Hi Mike,

The way to look at Gleason results:

3+3 = Gleason 6 This would be considered a very low risk

3+4 = Gleason 7 It means the cancer is more powerful and you will probably need treatment at some point. But it may be 10 years. Nobody knows, hence Active Surveillance.

I was Gleason 3+4 in October 2018 and offered Active Surveillance. Though they said prostate cancer is multifocal and it will keep trying to expand in other part of the prostate.

The protocol for Active Surveillance is regular PSA tests, MRI and at some point another biopsy. It would be interesting to ask your Doctor how they want to follow you. For me, after the 2nd biopsy I started thinking I wouldn't be happy to go for a third one. Then the PSA started rising and I agreed for surgery in September 2022.

Anyway, if they offer you active surveillance, it gives you time to think about it. 

 

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User
Posted 05 Mar 2024 at 20:13

Hi Mike, snap, had my diagnosis today as well. Head is spinning a bit but reading conversations on here is helping me out a bit. Keep your chin up and keep reading, knowledge is power. Best of luck with your journey. Neil

User
Posted 05 Mar 2024 at 23:36
Okay Mike - so you have been diagnosed with a stage 2 cancer and your Gleason score is 7 (3+4)

Based on that information, I assume that you have either been told that your cancer is contained and you have a choice of surgery or radiotherapy OR you have been told that your case is to be discussed by a multi-disciplinary team in the next couple of weeks who will make a recommendation on suitable treatment options?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2024 at 00:39

Originally Posted by: Online Community Member
Hi everyone, in a bit of a daze at the moment, not good with IT so bare with me, took me 20 mins to sign up ! 

I have had a brief look at the conversations and have been a bit baffled, what with all the numbers and codes

Hello Mike,

Welcome to the forum. I'm sorry that you've needed to find us but glad you have.

Likewise, NeilC.

I'm also very poor at IT and like you was confused with the the numbers and letters, that rate  this disease  I was rubbish at algebra when I was at school.

It's normal to feel baffled on diagnosis.

You'll find plenty of help, support and guidance here.

 

 

 

Edited by member 06 Mar 2024 at 00:46  | Reason: Additional text

User
Posted 07 Mar 2024 at 09:06

Hi Mike I had the same diagnosis 18 months ago ,I had my prostrate removed November 2022 and thankfully everything went really well ,it’s a big shock to be told that you have cancer but the people who look after you are fantastic , what found that really helped me was talking to some people who had the same diagnosis and listening to their stories good luck with your treatment 

User
Posted 07 Mar 2024 at 09:23

Originally Posted by: Online Community Member
Okay Mike - so you have been diagnosed with a stage 2 cancer and your Gleason score is 7 (3+4)

Based on that information, I assume that you have either been told that your cancer is contained and you have a choice of surgery or radiotherapy OR you have been told that your case is to be discussed by a multi-disciplinary team in the next couple of weeks who will make a recommendation on suitable treatment options?

Hi Lyn

Would active surveillance  also be  considered?

User
Posted 07 Mar 2024 at 11:03
It's possible but depends on how much cancer there is and where it is. PSA is quite low but some cancers produce low PSA depending on type, so best await full diagnosis and opinion of Consultant(s).who should have the advantage of seeing scans.
Barry
User
Posted 08 Mar 2024 at 14:47

Hi Adrian.

The doctor said that yes ! I can opt for active surveillance if I want to, because the tumor is small and the risk of it spreading is also very small ! he said regular ( twice a year MRI and PSA ) but with the PSA checks mine was very low 1.9 then 1.8 so not that finitue really, have a telephone call from them next week the 13th, and I think they will ask what procedue I want to go ahead with, have spoke to a couple of guys from my tennis club who had the same as us, 1 was advised to have Prostate out, he had high readings PAS 30, tumor size 39mm, the other chap went for injections and radio, then tablets, seeing as my readings were low, looks like I have been given the option, but in some ways, its more difficult, if I don,t have removeall and it spreads, even tho they say the odds are it will not, I would have whised to have it out no ?  thoughts... cant work out how to put spell check on sorry guys.

chat soon Mike. 

User
Posted 08 Mar 2024 at 15:36

Originally Posted by: Online Community Member

Hi Adrian.

The doctor said that yes ! I can opt for active surveillance if I want to, because the tumor is small and the risk of it spreading is also very small ! he said regular ( twice a year MRI and PSA )

Hello mate,

I opted for AS on biopsy results of Gleason 6 (3+3) only 2 out of 15 cores, with reasonable safety margins, T2a. Its what the MDT advised.

Unfortunately, over 20 months mine progressed and I had a prostatectomy. However, I was told that I was unlucky and that only 30% of those on AS with low grade/low volume cancer go onto require radical treatment.

I've always believed in the motto, if it ain't broke don't fix it. If you've been offered AS, that's the way I'd go, BUT, ensure you have all the follow up monitoring, PSA checks, and MRIs etc. Why risk the likely side effects of surgery or RT/HT when it may not be necessary? If whilst being monitored it's deemed radical treatment is required then go for it.

Always be guided by medical advice. I'm not medically trained. But I believe there is conclusive evidence that there is a move for more men to have AS. https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

 

Edited by member 08 Mar 2024 at 15:41  | Reason: Not specified

User
Posted 08 Mar 2024 at 15:42

Hi Adrian,

I also had Gleason 3+4 =7 and PSA 2.19 and was offered Robotic surgery or Brachytherapy  and after looking at the possible side affects on both the options i decided to go for Brachytherapy as i felt it was less invasive.

I had the brachytherapy in 2016 my PSA is very low and 7+ years on it's going very well . I am sure members on this site will give you lots of advise and their views.

John.

User
Posted 11 Mar 2024 at 11:25

Hi. I was diagnosed in January after biopsies were taken had 28 cores taken & only 4 showed cancer, was given a Gleason 3+4 T2 CPG2. I was offered every possible option but chose AS as mine is contained inside prostate.

After making the decision the consultant told me she has patients who have been on AS for 8/10yrs+ so that’s a positive outlook to hopefully look forward too, so not having anything done now saves any possible side effects of treatment, I’ve already got my surveillance PSa blood tests booked every three months & consultation with consultant arranged after next two PSa tests around July. I take that as a positive outlook for the future knowing the team are on the ball.

Some say it’s delaying the inevitable but I’d rather have more years of being watched, remembering I could die of it or with it!!  Having a positive outlook on it helps too, I’m just carrying on normal life

Remember everyone on here is different and on different journeys, we can all tell you our experiences but at the end of the day you have to decide. I found talking to the specialist nurses here a great reassurance and also do you own research too, look up the results of the “ProtecT” trial it’s an interesting read.  Also there’s a few good YouTube channels from medical professionals worth watching especially one from the prostate cancer research institute with Dr Schultz. Don’t just use google🙂

Good luck in whatever pathway you take and remember the forums are here if you need but to speak with the nurses on here they are nothing short of excellent.👍🏼 

 

User
Posted 11 Mar 2024 at 17:38

Hi Mike,

The way to look at Gleason results:

3+3 = Gleason 6 This would be considered a very low risk

3+4 = Gleason 7 It means the cancer is more powerful and you will probably need treatment at some point. But it may be 10 years. Nobody knows, hence Active Surveillance.

I was Gleason 3+4 in October 2018 and offered Active Surveillance. Though they said prostate cancer is multifocal and it will keep trying to expand in other part of the prostate.

The protocol for Active Surveillance is regular PSA tests, MRI and at some point another biopsy. It would be interesting to ask your Doctor how they want to follow you. For me, after the 2nd biopsy I started thinking I wouldn't be happy to go for a third one. Then the PSA started rising and I agreed for surgery in September 2022.

Anyway, if they offer you active surveillance, it gives you time to think about it. 

 

User
Posted 11 Mar 2024 at 20:14

Hi Mike

Sorry to hear about your diagnosis. I think it is impossible to advise what you should do as everyones situation is different. I was diagnosed in Jan 2020 with a PSA of 36 and Gleason 9. I had no hesitation at all in going for surgery and this was recommended by the surgeon and the oncologist. I just wanted to get rid of it and I am sure I made the right decision so no regrets. I did have hormone treatment on first diagnosis whilst awaiting surgery and I was not keen on that as an ongoing option and I really hope I never have to have it again. I have recovered well overall but unfortunately I have had a recent recurrence and following a PET scan, cancer has been detected in a bone in my pelvic area. I have been referred for radiotherapy to treat this. 

There are pros and cons with all options for treatment and no absolute guarantees on the outcome so you just have to consider these and with advice from the medics decide what you think is best for you.

Best of luck!

 

User
Posted 11 Mar 2024 at 21:28

I was diagnosed some 19 years ago (I learned afterwards Gleason 6, 3+3). I opted for surgery at that time.
Everyone is different and the choice is yours, even the medics say that, and of course since then more treatment options now exist.  
I have no regrets. (I also now suffer from ED but that can be coped with, given options available.)

Edited by member 11 Mar 2024 at 21:32  | Reason: Not specified

 
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